Welcome to this month’s round up of the most common questions asked through the MND NSW Info Line! Whether you are living with MND, supporting a loved one, or working in the MND space, these are the topics people have been asking about.
Question 1: Can I access Palliative Care even when I am still living independently?
Yes, palliative care is not only for the final stages of life and can be accessed while you are still living at home. Palliative care is designed to support quality of life by focusing on:
- Managing physical symptoms such as pain and breathing changes
- Supporting emotional, spiritual, and psychological well-being
- Helping navigate services and planning ahead
- Supporting your family and carers.
Your GP can make a referral to a palliative care team. Access to palliative care can vary depending on your Local Health District. Your MND Advisor can help you to understand palliative care and what is available in your area.
Learn more:
Question 2: Is MND contagious or caused by a certain lifestyle?
No, MND is not transmissible from person-to-person contact.
The exact causes of MND are not currently known. However, there is ongoing research investigating the potential causes of MND around the world. There is no evidence that MND is caused by a particular lifestyle.
Here’s what we do know:
- The majority of MND diagnoses are ‘sporadic’ which means without clearly identifiable causes.
- Approximately 15% of MND diagnoses are from inherited MND related genes. This is known as familial MND.
Learn more:
Question 3: How can I know what alternative or off-label medications are safe for people with MND?
ALS Untangled was created by a neurologist and is now an international network of physicians and researchers helping to review hundreds of alternative and off-label medications for ALS/MND.
People living with MND and their families often report considering alternative treatments which is usually researched on the internet. It can be confusing to sift through all the information and figure out what is accurate or inaccurate.
Each medication listed on the site is graded against five different categories: mechanistic plausibility, preclinical models, cases, trials and risks. Grades in each category range from A (best) to F (worst), with U meaning they could not find any useful disclosable evidence for that treatment.
Continue to exercise caution for all off-label and alternative treatments and medications even if it has been listed as A (best) category. Always consult your health care professionals before implementing any new strategies.
If the treatment you are interested in has not been review yet, you can suggest a review through the website.
We understand exploring these options may be important to some people and provide these details for information purposes only.
We do not endorse the use of any off-label and alternative medications and treatments.
Learn more:
Question 4: I am a health professional looking for to learn more about MND. What professional development education is available?
We regularly support the MND workforce with education, training, and resources. If you are new to working with people with MND or want to update your knowledge, we have opportunities for you to build confidence in delivering person-centred, high-quality support.
- MND upskill is an in-depth look at MND and symptom management.
- MND Aware is an online course that is available on the MND Hub. It is a comprehensive course suitable for
- Community, home care, disability, and aged care workers
- Volunteers pastoral care workers
- Health, allied health, and palliative care professionals
- Support coordinators and case mangers
- MND in-service is available to any organisation who is supporting a person with MND and is accessing our Advisor program. This session can provide information about MND, symptoms, and management strategies. It can be delivered in-person or online by an Advisor.
Learn more:
Question 5: I like to play video games, now that I have been diagnosed with MND, will I be unable to play?
Not necessarily! Videos games are a great way to connect with people, keep your mind active, and relax and have fun. As muscles in the fingers and hands weaken, playing games may become more difficult. However, gaming can be adapted so you can be comfortable and supported.
Tops tips
- Adapt your gaming setup for example, positioning or using mounts
- Manage symptoms that affect gaming such as muscle weakness
- Use adaptive technology such as voice command integration or eye-gaze systems
- Explore accessibility features.
Your Occupational Therapist, Physiotherapist, or Speech Pathologist can help to keep you safe while gaming and advise you on adaptive technology. MND Australia has also developed ebooks on gaming and MND.
Learn more:
Do you have a question about MND?
Whether you’re newly diagnosed, caring for a loved one, or navigating the MND space as a health professional, we’re here to help.
Call us on 1800 777 175
Or submit and online inquiry at Contact MND NSW
“We can't do this alone. But together, we're unstoppable.”
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